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Learning How To Be A Patient

(A Good One – Nobody Wants To Be The Patient Whose Name On The Schedule Causes The Doctor To Groan)

Being thrown into the role of patient is frustrating and scary. I’ve learned a ton in the past three years. Information abounds on medical websites and blogs, plus the traditional paper & ink books. Sorting through everything to figure out what’s trustworthy and what’s snake oil can be a challenge.

Right about the time I was diagnosed, our local newspaper ran a story on how to find reliable medical information online. That gave me a starting point. Don’t google medical terms. There will be an overwhelming number of hits and no way to verify the accuracy of the information. Go to reliable medical websites. Search places such as Family Doctor, sponsored by the American Academy of Family Physicians, or Up-to-Date For Patients (listed as a patient-education site by the American Academy of Family Physicians, the Society of General Internal Medicine, the Endocrine Society, the American College of Rheumatology, the American College of Obstetricians and Gynecologists, the American Thoracic Society, and the American Gastroenterological Association). Other sites like MedicineNet, Johns Hopkins, Mayo Clinic, and even WebMD are helpful and reliable.

Those sites, however, are for researching diseases or symptoms. I wanted more. In addition to disease-specific information, I wanted general “how to interact with and understand doctors” information. There was no shortage of patients offering advice, but that didn’t seem like the best source for learning how best to communicate with doctors. As if to emphasize that point, one person in particular was extremely vocal about how patients ought to behave, demanding this and insisting on that, but it didn’t take long to discover that the person had bounced around from one practice to the next; she’d been through five different rheumatologists in seven years, firing one doctor after the other when she didn’t get what she wanted. I decided that I’d rather get my information from someone who knows what they’re talking about. It seems as though doctors are in the best position to provide information on doctor-patient relationships.

A very helpful book I discovered was Dr. Jerome Groopman’s How Doctors Think. If I could only recommend one book, I’d choose this one. I bought it when it was only available in hardback, and it was worth every cent. After reading it the first time, I went back through it again and took notes. Then I loaned it to a friend who lost it, so bought another copy because I found that I often wanted to refer to it. It’s that good. Every time I read it, I discover something I hadn’t picked up on previously. Your public library probably has it, or can access it through inter-library loan, but it’s in paperback now so reasonably priced. Barnes & Noble has the intro available online, so you can get a preview before shelling out the money.

My next find was You: The Smart Patient. I bought it. There were tons of good tips in there that I found very helpful; things like compiling a medical history, asking questions, and a whole education on things one should know when taking medications. There were also a few recommendations that aren’t necessarily the best information. Consider the source. Since The Joint Commission (formerly JCAHO) had a large hand in writing this book, take it with a grain of salt when they recommend checking Joint Commission’s website for a hospital’s quality ratings. When they insist that the way to find the best doctor is to only see someone who’s a member of the American Medical Association, you gotta wonder why; a significant number of physicians don’t belong to the AMA, and they’re highly competent doctors. You can probably find this book at your public library if you’re inclined to read it.

Next I discovered medblogs. Some have been incredibly helpful, both in providing a peak into how doctors view their interactions with patients, and in giving general tips. Dr. Rob’s Musings of A Distractible Mind was the first blog I found. I spent all my free time (and a good chunk of time when I should have been doing other things) for a month reading through his archives. If you’re not already reading Dr. Rob, follow the link and search on the categories Physical Exam and Patient Education.

From Dr. Rob’s blog roll I discovered other blogs, and those led to others, which led to others… One that I especially liked recently went private, much to my disappointment, leaving my current favorites (in no particular order):

One thing I gathered fairly quickly is that while some things are universal, others are a matter of personal preference. Not every doctor does things the same way. Some doctors use social media to make general patient recommendations, but while every one of those people might be a doctor, they’re not my doctor. I put together a short list of tips that I’ve found on various blogs and took them to my doctor to see if those are recommendations with which he agrees. It led to a very good discussion, and now I know what his recommendations are.

Make no assumptions. Five online physicians might state a preference, but if they’re not your doctor, you still don’t know what your doctor would like you to do. I’m so glad that I finally talked to my doctor and got his perspective.

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9 thoughts on “Learning How To Be A Patient”

Great post, Socks. Thanks for the many good sources of information about how to be a better patient–I took a look at the introduction to “How Doctors Think” and plan to buy it before long. Fascinating stuff.

Learning how to talk to doctors is something I never really thought about before starting to read your blog, but I can see how doing so could really make a big difference in the ongoing relationship. I’d like to make a list of “tips” to ask my rheumatologist about next time I see him. Might you be willing to share the list you used?

Yes, I’m lazy. 😉

Hope you’re feeling well and ready for the upcoming holiday. And I was wondering how your daughter is doing, too. How’s she feeling? Any new news about her diagnosis?

As a nurse – and a patient, I come at this from a different perspective. But your suggestions are spot-on! I liked, and used, approaches like the following guidehttp://bit.ly/bqfsAd that gave me the structure to cover things completely, but also gave me ideas about how to elicit critical information from patients.

I’m not and was not a rheum nurse or a family practice nurse, but the outlines for getting a history really are not specific to an area of practice. That kind of specificity comes from the specialty organizations.

So, as a patient, I gather as much information as I possibly can, organize it according to one of the outlines in my wordprocessor (whichever outline works best) and print it out. That’s helped me so much – and helped my docs, too!

Thank you for posting that link. Similar (highly condensed) version of the info in a book I’ve been reading.

This is one area that I think needs huge improvement. As a patient, I got really tired of telling the front desk why I wanted to see the doctor, then telling the nurse why I was there, then having the doctor walk into the room and act as though he had no idea why I was there. Hello! Do you people ever talk to one another?! Good blog fodder, though🙂

Thanks for passing all of this information along. It is overwhelming when you get that first google search back after typing in ‘rheumatoid arthritis’. TOO much!!! I’m excited to try some of your suggestions. Thanks!

And I completely agree that medical people forget that normal people don’t have a clue about the system.

It’s my 1st year in med school, and just last year I was confused as to why my doctor was so quick to disregard certain things I thought were important. Now I realize that, in that case, what I thought of as thoughtlessness was actually efficiency – the doctor wasn’t ignoring my comments, they actually led him to ask me questions that at the time I thought were unrelated.

I didn’t even know my doctor scheduled appointments in 20 minute blocks – I had no idea why he was rushing. Now I deal with patients who don’t know that the doctor is scheduled in 20 minute blocks.

Medical professionals can be pretty terrible at communicating this information to patients. I wish doctors were better about it – better communication would help everyone involved.